A massive and important update on the current state of Gavin’s mental health care

Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well.

I heard back from the nurse at Gavin’s psychiatrist’s office this afternoon and we had respectful but totally unproductive conversation.
This was one of those conversations where I’m not sure if I’m more frustrated now than I was before but I think I am. Yeah, I’m pretty sure I’m more frustrated now.

After listening to what happened, this is what the nurse told me:

I wish I could tell you that things were going to get better but frankly, they’re only going to get worse.

Here’s the underlying problem. The root of all this, if you will.
Our doctor was going to have to drop all his Medicaid patients as a result of the healthcare overhaul and changes made to Medicaid. I don’t think this was a choice they were making, it was being made for them, if that makes sense.

In order to avoid this, he partnered with Community Services and can continue to see his Medicaid patients but only on Mondays.
Everyone agrees it’s a stupid rule but there’s either a really good reason for it that we just don’t understand or the person who made the rule has no clue what they’re doing and how this impacts treatment/patient care.

This means that all Medicaid patients have to be squeezed into Monday time slots, of which there aren’t enough and that’s a massive problem.

That’s the long and short of it.

As time goes on, we can look forward to this only getting worse and more unreliable. That’s straight from the nurses mouth.

I explained that it wasn’t so much the wait that was the problem. It’s that they’re not communicating at all with their patients. There should be someone in the office to manage the people waiting, as long as there’s people waiting to be seen.

People are going to have questions like is the doctor even here because we’ve been here for three hours and haven’t seen or heard from anyone, for example.

Our other doctors will call to let us know that there’s going to be a wait and recommend that we arrive xxxxx minutes or hours later.

I don’t mind waiting but there needs to be communication between the staff and the patients that are waiting, quite literally for hours to be seen.

What really pisses me off is that as one of his first patients, we’ve experienced the very best of care. Unfortunately, over the years, it’s gone down hill as he’s absorbed more patients than can be efficiently or effectively managed and patient care has been given a porcelain funeral.

If I hadn’t already known that, I would have learned it today because the nurse said something very similar.

Nothing was really even resolved today and that has me on edge. I even said that we are going to have to look elsewhere if we can’t receive the care that our kids need, especially in Gavin’s case.

Truthfully, that’s an empty threat because aside from possibly the Cleveland Clinic, I don’t know of anywhere within a few hours drive that would be qualified to care for Gavin’s conditions. I know Cincinnati Children’s Hospital is supposed to be amazing but that’s a good four hour drive.

That leads me to another issue.

There doesn’t seem to be effective triage anymore. There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.

He’s frankly the only psychiatrist that we know about, who’s qualified to deal with a kid like Gavin. It used to be that he focused on patients like Gavin and sent the standard ADHD kid to the nurse practitioner. It doesn’t seem like that is still the protocol.

Every kid has a right to get the help they need but some, if not most kids can be treated by any decent psychiatrist (assuming one can be found and they take your insurance).

The kids like Gavin who are diagnosed with things like Childhood Disintegrative Disorder, Schizoaffective Disorder and several other comorbidities, don’t have that same option. They need to be seen by someone very specific.

These disorders are so rare that your lucky to find someone who’s even seen it in real life before.

The Cleveland Clinic told us last month at Gavin’s appointment that they will maybe see one kid with Childhood Disintegrative Disorder every five years or so and that’s the Cleveland Clinic as a whole, not just the main campus. There were 6.62 million visits to the Cleveland Clinic in 2015 alone. That’s an estimated 33,100,000 visits over a five year period of time (roughly). One of those visits might see a child diagnosed with Childhood Disintegrative Disorder. That’s how rare this is and what we’re up against.

That’s just to help put this into perspective. The point being, that when resources are limited, it’s all about triage.

Anyway, Gavin will try again to be seen on September 12th. This time it’s much earlier in the day, so that should increase our chances of getting through the door.

The nurse told me that I need to have this same exact conversation with the doctor, so he knows what’s going on and then we can figure out what to do from that point forward.

In the meantime, we still don’t have new appointments for the other two boys but refills were sent into the pharmacy. That eliminates the immediate crisis and buys us some time to figure out what we do next.

I understand that the doctors office in an impossible situation, as a result of things outside of their control but don’t doctors offices have a right to stop taking new patients, so that things like this don’t happen?

Don’t get me wrong, I love everyone in that office but I’m not real happy with them right now. We won’t make any decisions until after our next appointment, two weeks from now.

Unless we can figure something out, so that Gavin’s receiving the care he needs and deserves, we’re going to have to make a move. I don’t know what that move is but this can’t continue.

It’s been almost nine months since Gavin’s been seen and he’s on a medication that is more tightly controlled than anything else in the US. Nine months is way too long. I’m pretty sure he needs to see the doctor every couple of months at minimum, just to get his refills and be evaluated for continued use of the Clozapine.

Something has to give… Having the best doctor for his particular mental health issues, is only beneficial if he’s actually being seen.

I don’t know what we’re going to do but I’m hoping we can figure something out, even if it’s as simple as Gavin getting the 8am appointments. That’s a really simple solution and shouldn’t cause a problem because it’s only once every couple of months.

Either way, I’m grateful we got him rescheduled without having to wait until the next available appointment, which happens to be at the end of October.

With any luck, this will get figured out.

As I’m signing off for the night, I just want to say that I hope that anyone dealing with something similar, can find a solution that works. Life is hard enough on the good days. Things like this make everything worse…. My family is far from the only one facing these kinds of challenges and many are facing far worse….

…and one last thing.. Stop the fucking bipartisan arguing over the healthcare system. It’s time to sack up and fix it. Any idiot can look at the state of things and come up with solutions that are better than the status quo. What are we paying you for anyway? Maybe if you had to deal with the same issues yourself, things would be different…. Let’s put every government official on Medicaid and let both them and their families navigate the same sadistic nightmare that so many of their constituents face daily.

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)

108 comments

Not to defend the length of your wait (it was long) but we have a Dr quite similar. He is very very good and is always running late. One of the reasons, is that he listens to patients, he doesnt rush them in and out like cattle if there is a problem.
He may start his day on time, but if he spends 10 extra minutes with each patient or more, really caring, by the end of the day, he can and has been almost 2 hours behind. But the patients wait…. because he is good and he cares. Each patient knows that if they need extra time it is given, some dont need that but some do.
Hubby’s cancer Dr is very specialized, we drive an our and a half to see him, but we know he is the best we want the best, we want him to live.
It sounds like your Dr is very specialized too, and limiting days for Medicaid likely just makes it worse.
Pity they cant schedule visits differently, but perhaps seeing Gavin only although its a hassle would be the best course. He has all day and getting an early appointment will help. Have the E’s go in on a different day if it is only a med check.
Best of luck.

I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

That’s happened many, many times. I’ve pulled the kids out of school for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

Does that make sense?

It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…

I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

That’s happened many, many times. I’ve pulled the kids out of school for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

Does that make sense?

It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…

Not to defend the length of your wait (it was long) but we have a Dr quite similar. He is very very good and is always running late. One of the reasons, is that he listens to patients, he doesnt rush them in and out like cattle if there is a problem.
He may start his day on time, but if he spends 10 extra minutes with each patient or more, really caring, by the end of the day, he can and has been almost 2 hours behind. But the patients wait…. because he is good and he cares. Each patient knows that if they need extra time it is given, some dont need that but some do.
Hubby’s cancer Dr is very specialized, we drive an our and a half to see him, but we know he is the best we want the best, we want him to live.
It sounds like your Dr is very specialized too, and limiting days for Medicaid likely just makes it worse.
Pity they cant schedule visits differently, but perhaps seeing Gavin only although its a hassle would be the best course. He has all day and getting an early appointment will help. Have the E’s go in on a different day if it is only a med check.
Best of luck.

I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

That’s happened many, many times. I’ve pulled the kids out of school for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

Does that make sense?

It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…

Not to defend the length of your wait (it was long) but we have a Dr quite similar. He is very very good and is always running late. One of the reasons, is that he listens to patients, he doesnt rush them in and out like cattle if there is a problem.
He may start his day on time, but if he spends 10 extra minutes with each patient or more, really caring, by the end of the day, he can and has been almost 2 hours behind. But the patients wait…. because he is good and he cares. Each patient knows that if they need extra time it is given, some dont need that but some do.
Hubby’s cancer Dr is very specialized, we drive an our and a half to see him, but we know he is the best we want the best, we want him to live.
It sounds like your Dr is very specialized too, and limiting days for Medicaid likely just makes it worse.
Pity they cant schedule visits differently, but perhaps seeing Gavin only although its a hassle would be the best course. He has all day and getting an early appointment will help. Have the E’s go in on a different day if it is only a med check.
Best of luck.

I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

That’s happened many, many times. I’ve pulled the kids out of school for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

Does that make sense?

It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…

I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

That’s happened many, many times. I’ve pulled the kids out of school for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

Does that make sense?

It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…

Not to defend the length of your wait (it was long) but we have a Dr quite similar. He is very very good and is always running late. One of the reasons, is that he listens to patients, he doesnt rush them in and out like cattle if there is a problem.
He may start his day on time, but if he spends 10 extra minutes with each patient or more, really caring, by the end of the day, he can and has been almost 2 hours behind. But the patients wait…. because he is good and he cares. Each patient knows that if they need extra time it is given, some dont need that but some do.
Hubby’s cancer Dr is very specialized, we drive an our and a half to see him, but we know he is the best we want the best, we want him to live.
It sounds like your Dr is very specialized too, and limiting days for Medicaid likely just makes it worse.
Pity they cant schedule visits differently, but perhaps seeing Gavin only although its a hassle would be the best course. He has all day and getting an early appointment will help. Have the E’s go in on a different day if it is only a med check.
Best of luck.

I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

That’s happened many, many times. I’ve pulled the kids out of school for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

Does that make sense?

It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…

I’m not going to lie, my first thought upon reading this post was “How dare he? He has free care for his children and he is going to bitch about how that care is doled out to him? How dare he complain about the hand that feeds him?!”

But, I held off… waited for my morning caffeine to wear off and now I can hopefully offer respectful and productive discourse. 😉

I have a feeling that the ACA is responsible for the office wanting to drop Medicaid. The billing for both is a nightmare. I know several of my doctors will not accept patients who have the ACA version of the same insurance I have because they don’t get paid as much or as efficiently, and Medicaid has a similar reputation. It is probably a situation of “we could handle one clusterfk of an insurance company, but not several so we’re cutting it off.” The fact that your doctor found a way to continue seeing Medicaid patients speaks volumes. He was unwilling to throw all of you away and he should be commended for that. The issue with the doctor now needing to see patients that were previously seen by a NP is also an insurance thing. My insurance wants me seen by a doctor, not an NP, and they won’t pay otherwise. I agree that the office should at the very least let patients know how long it might take to be seen, but I also understand that they can’t keep the staff there indefinitely. As Dot said, a note on the door would probably be a workable solution in the short term.

As for not all patients being serious enough to be seen by the doctor, be part of the
solution rather than part of the problem. Gavin should definitely stay with this man who has seen him through it all, but that doesn’t mean you can’t take the other boys to a different doctor
since they are mostly going for med checks. That would be a small step in alleviating the overbooking problem, and it would help both you and the other patients. It would also cure the problem of having to take all the kids with you and having the E’s sitting in a waiting room for
hours at a time. I really do feel sorry for the staff at these overworked offices. They are likely
dealing with angry patients on a daily basis. I know that no matter how much I like my job, that is going to change quickly if I have people yelling at me or angry with me every time I pick up
the phone.

It’s nice to see you Kim. The E’s see the nurse practitioner as I stated previously but they have to see the doctor on occasion as per their treatment plan.

I have a really good relationship with everyone at the office and so we can have these conversations without there being any lasting damage or ill feelings. As for the free healthcare, I had really good private coverage but it wouldn’t touch anything the boys have. That’s why many families like mine have to move to Medicaid…..

This is interesting…and moving the conversation in another direction…are you saying you think Medicaid is better than private insurance (in your case)? Cause I have to be honest, I can’t imagine the hoops that you have to go through with working within that system.

Medicaid is absolutely better, without question. So many private insurance companies will not cover anything Autism related at all.

It’s not without its drawbacks but I suspect most parents would agree. Gavin has Medicaid because he’s on disability.

Google things like Autism and insurance. It’s a nightmare. I think in some ways it’s getting better because states are forcing companies to cover Autism but it’s not everywhere and last I checked, it wasn’t in Ohio.

It makes sense, and I can only go by my insurance…and I have everything covered, it’s just at the cost of a copay. At this point, I would think most treatments are in fact covered. Especially with the move to ‘obamacare’ type coverage the past 8 years

I didn’t mean to make it sound like you had given the office staff a hard time, I was just making comment that I think it can often be a thankless job when you’re in an office as busy as this doctor’s seems to be. To help solve part of the problem, would it be possible for you (and are you willing) to move the E’s to a different doctor? That would also keep you from having to pull them out of school for early morning appointments; something that’s not an issue for Gavin.

I’m confused about the insurance. I admittedly know little about autism coverage because it’s not something I have to worry about, but is Medicaid seriously better coverage than private insurance? Or it is a money thing? I can understand it being a much better choice cost-wise… from January of 2014 through today, I have put out just over $44,000 in copays, deductibles, and coinsurance, but my coverage is excellent and I can go to any doctor I want, specialists included. Knock on wood, there is nothing that I have had to fight for or do without because insurance denied me. Granted, I am aware that affording private insurance would be close to impossible for you, but I am curious whether it is the cost or coverage that is more attractive to the average person.

I’m not going to lie, my first thought upon reading this post was “How dare he? He has free care for his children and he is going to bitch about how that care is doled out to him? How dare he complain about the hand that feeds him?!”

But, I held off… waited for my morning caffeine to wear off and now I can hopefully offer respectful and productive discourse. 😉

I have a feeling that the ACA is responsible for the office wanting to drop Medicaid. The billing for both is a nightmare. I know several of my doctors will not accept patients who have the ACA version of the same insurance I have because they don’t get paid as much or as efficiently, and Medicaid has a similar reputation. It is probably a situation of “we could handle one clusterfk of an insurance company, but not several so we’re cutting it off.” The fact that your doctor found a way to continue seeing Medicaid patients speaks volumes. He was unwilling to throw all of you away and he should be commended for that. The issue with the doctor now needing to see patients that were previously seen by a NP is also an insurance thing. My insurance wants me seen by a doctor, not an NP, and they won’t pay otherwise. I agree that the office should at the very least let patients know how long it might take to be seen, but I also understand that they can’t keep the staff there indefinitely. As Dot said, a note on the door would probably be a workable solution in the short term.

As for not all patients being serious enough to be seen by the doctor, be part of the
solution rather than part of the problem. Gavin should definitely stay with this man who has seen him through it all, but that doesn’t mean you can’t take the other boys to a different doctor
since they are mostly going for med checks. That would be a small step in alleviating the overbooking problem, and it would help both you and the other patients. It would also cure the problem of having to take all the kids with you and having the E’s sitting in a waiting room for
hours at a time. I really do feel sorry for the staff at these overworked offices. They are likely
dealing with angry patients on a daily basis. I know that no matter how much I like my job, that is going to change quickly if I have people yelling at me or angry with me every time I pick up
the phone.

It’s nice to see you Kim. The E’s see the nurse practitioner as I stated previously but they have to see the doctor on occasion as per their treatment plan.

I have a really good relationship with everyone at the office and so we can have these conversations without there being any lasting damage or ill feelings. As for the free healthcare, I had really good private coverage but it wouldn’t touch anything the boys have. That’s why many families like mine have to move to Medicaid…..

This is interesting…and moving the conversation in another direction…are you saying you think Medicaid is better than private insurance (in your case)? Cause I have to be honest, I can’t imagine the hoops that you have to go through with working within that system.

Medicaid is absolutely better, without question. So many private insurance companies will not cover anything Autism related at all.

It’s not without its drawbacks but I suspect most parents would agree. Gavin has Medicaid because he’s on disability.

Google things like Autism and insurance. It’s a nightmare. I think in some ways it’s getting better because states are forcing companies to cover Autism but it’s not everywhere and last I checked, it wasn’t in Ohio.

It makes sense, and I can only go by my insurance…and I have everything covered, it’s just at the cost of a copay. At this point, I would think most treatments are in fact covered. Especially with the move to ‘obamacare’ type coverage the past 8 years

I didn’t mean to make it sound like you had given the office staff a hard time, I was just making comment that I think it can often be a thankless job when you’re in an office as busy as this doctor’s seems to be. To help solve part of the problem, would it be possible for you (and are you willing) to move the E’s to a different doctor? That would also keep you from having to pull them out of school for early morning appointments; something that’s not an issue for Gavin.

I’m confused about the insurance. I admittedly know little about autism coverage because it’s not something I have to worry about, but is Medicaid seriously better coverage than private insurance? Or it is a money thing? I can understand it being a much better choice cost-wise… from January of 2014 through today, I have put out just over $44,000 in copays, deductibles, and coinsurance, but my coverage is excellent and I can go to any doctor I want, specialists included. Knock on wood, there is nothing that I have had to fight for or do without because insurance denied me. Granted, I am aware that affording private insurance would be close to impossible for you, but I am curious whether it is the cost or coverage that is more attractive to the average person.

I think your idea of the office telling you the real time you will be seen is a great one. Sadly, the psychiatrist probably had to let his office staff go home for the night, so there was no one to do that kind of work. Kudos to that doc for staying, though. If he/she was 2 hours behind, it’s a cinch those were not extra paid hours, just more time spent on people who needed more help. It’s got to come out of someone’s hide when there is too much need and not enough hands on deck. Thank God that physicians still see their profession as a helping one.

Hey, maybe you could write an app that would text the appointments on Monday to let them know how far behind things were. Even if there was no office staff, the physician could update the app every hour or so…Probably some HIPAA violation there. Okay, maybe they could tape a piece of paper to the front door.

I think your idea of the office telling you the real time you will be seen is a great one. Sadly, the psychiatrist probably had to let his office staff go home for the night, so there was no one to do that kind of work. Kudos to that doc for staying, though. If he/she was 2 hours behind, it’s a cinch those were not extra paid hours, just more time spent on people who needed more help. It’s got to come out of someone’s hide when there is too much need and not enough hands on deck. Thank God that physicians still see their profession as a helping one.

Hey, maybe you could write an app that would text the appointments on Monday to let them know how far behind things were. Even if there was no office staff, the physician could update the app every hour or so…Probably some HIPAA violation there. Okay, maybe they could tape a piece of paper to the front door.

“Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well.”

“Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well.”

Yeah. I get that’s frustrating, but you are really taking a shitty position on this one. Your son isn’t more important than the other patients and the length of time you have been at the doctor will not matter. At all. Not even a tiny bit.

I suggest you ask the office (and Doctor) how to best deal with the way things are and go from there…because respectful or not if you even hint at either of the two things above and you will most likely be dismissed.

Take a step back and reread what I wrote. I was venting. Secondly, I never said he was more important (although what parent wouldn’t prioritize their own child), I said he was more complicated and in need of very specialized services that not every kid there needs.

Many of the kids that do go through, don’t need the same level of specialized care, that’s just a fact. That’s not my opinion, that’s the protocol at the doctors office or it was before this insurance debacle.

The problem is that every person on Medicaid can only be seen on one day and so there’s no longer a triage because of the limited access now.

The issue is that this impacts the patients who need the specialized care but can’t get it anymore because they now have to cram everyone into 4 days a month. There’s very little ability to prioritize anyone now.

There’s nothing wrong with my stance on this. I’m not taking away from any of the other kids but the reality is that a kid like Gavin has no other options and can’t be treated by anyone else.

That’s what I was saying. Does that make sense?

Also when I start out a post by saying that I’m venting/ranting, that means I’m sharing my feelings in the moment and so it’s more of a reaction, rather than having time to think about everything and come up with the perfect things to say.

I get venting….but that doesn’t mean you can’t be questioned on any of it. And whether or not you directly said ‘important’ you definitely implied that Gavin should get front of the line treatment. No reason to argue that point, it’s how I read it.
With that said…..
I’m sure all of the hassles are due to Medicaid red tape and the sheer number of people that can only go to a finite number of doctors that will accept it. Which is why the ‘help me navigate the system’ conversation would be much more productive.

I had that conversation with the nurse yesterday and her reply was that she wishes she could tell me it was going to get better but it’s only going to get worse.

As for your first paragraph, I wasn’t saying in any way shape or form that Gavin was more important. I was saying that he needed highly specialized care, that not every kid there needs. That’s just a fact. It’s about people getting what they need, when they need it.

Because of all the changes to healthcare, this doesn’t seem possible anymore.

By the way, I do appreciate your approach with your comments. We can see things differently but the underlying respect is there. Thank you very much for that… ☺

Yeah. I get that’s frustrating, but you are really taking a shitty position on this one. Your son isn’t more important than the other patients and the length of time you have been at the doctor will not matter. At all. Not even a tiny bit.

I suggest you ask the office (and Doctor) how to best deal with the way things are and go from there…because respectful or not if you even hint at either of the two things above and you will most likely be dismissed.

Take a step back and reread what I wrote. I was venting. Secondly, I never said he was more important (although what parent wouldn’t prioritize their own child), I said he was more complicated and in need of very specialized services that not every kid there needs.

Many of the kids that do go through, don’t need the same level of specialized care, that’s just a fact. That’s not my opinion, that’s the protocol at the doctors office or it was before this insurance debacle.

The problem is that every person on Medicaid can only be seen on one day and so there’s no longer a triage because of the limited access now.

The issue is that this impacts the patients who need the specialized care but can’t get it anymore because they now have to cram everyone into 4 days a month. There’s very little ability to prioritize anyone now.

There’s nothing wrong with my stance on this. I’m not taking away from any of the other kids but the reality is that a kid like Gavin has no other options and can’t be treated by anyone else.

That’s what I was saying. Does that make sense?

Also when I start out a post by saying that I’m venting/ranting, that means I’m sharing my feelings in the moment and so it’s more of a reaction, rather than having time to think about everything and come up with the perfect things to say.

I get venting….but that doesn’t mean you can’t be questioned on any of it. And whether or not you directly said ‘important’ you definitely implied that Gavin should get front of the line treatment. No reason to argue that point, it’s how I read it.
With that said…..
I’m sure all of the hassles are due to Medicaid red tape and the sheer number of people that can only go to a finite number of doctors that will accept it. Which is why the ‘help me navigate the system’ conversation would be much more productive.

I had that conversation with the nurse yesterday and her reply was that she wishes she could tell me it was going to get better but it’s only going to get worse.

As for your first paragraph, I wasn’t saying in any way shape or form that Gavin was more important. I was saying that he needed highly specialized care, that not every kid there needs. That’s just a fact. It’s about people getting what they need, when they need it.

Because of all the changes to healthcare, this doesn’t seem possible anymore.

By the way, I do appreciate your approach with your comments. We can see things differently but the underlying respect is there. Thank you very much for that… ☺

Quoting you
“There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.”
How dare you say that? You preach and preach about people from the outside judging your kids. You talk about how one of the worst things to say to an autism parent is ‘Well he doesn’t look autistic’ then you turn around and play doctor? Laughable! Rob, you were an EMT for a very very short time, that does not give you the insight to triage psychiatric patients.
You need to step back and check your ego, it’s getting a tad out of hand.

So ban me.
And many many years is also flawed according to your own timeline.
But EMT or Medic still doesn’t give you the right to judge and triage other patients. You don’t go into the appointment with them, you have no idea what happens behind that doctors closed door. You can only state it as a fact for your own kids.

This is worse than when you said the teachers at your special needs school don’t understand special needs kids.

And the only difference between an EMT and a medic is the ability to start an IV and administer drugs, it doesn’t give you a psychiatric degree. Unless there is some magical medic program in Ohio

Of course there should be triage. Cancer patients should be seen before ear infections. Are we really disputing that? And why so hostile? Aren’t we all in this world together? When people in your real life unburden themselves to you, do you immediately attack them? Please think about a new approach, I think it would benefit you as well as people you come into contact with.

But should cancer patients always be seen before ear infections for all appointments? This was a routine appointment, not an emergency which would immediately remove any critical need. Seems like the issues were 1. lack of communication and 2. The fact that all five of them were waiting. Which is all just sucky things to deal with, but nothing that would require any sort of triage.

It’s the system of only seeing Medicaid patients on one day…and that is a problem with the influx of Medicaid patients on doctors offices.

Quoting you
“There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.”
How dare you say that? You preach and preach about people from the outside judging your kids. You talk about how one of the worst things to say to an autism parent is ‘Well he doesn’t look autistic’ then you turn around and play doctor? Laughable! Rob, you were an EMT for a very very short time, that does not give you the insight to triage psychiatric patients.
You need to step back and check your ego, it’s getting a tad out of hand.

So ban me.
And many many years is also flawed according to your own timeline.
But EMT or Medic still doesn’t give you the right to judge and triage other patients. You don’t go into the appointment with them, you have no idea what happens behind that doctors closed door. You can only state it as a fact for your own kids.

This is worse than when you said the teachers at your special needs school don’t understand special needs kids.

And the only difference between an EMT and a medic is the ability to start an IV and administer drugs, it doesn’t give you a psychiatric degree. Unless there is some magical medic program in Ohio

Of course there should be triage. Cancer patients should be seen before ear infections. Are we really disputing that? And why so hostile? Aren’t we all in this world together? When people in your real life unburden themselves to you, do you immediately attack them? Please think about a new approach, I think it would benefit you as well as people you come into contact with.

But should cancer patients always be seen before ear infections for all appointments? This was a routine appointment, not an emergency which would immediately remove any critical need. Seems like the issues were 1. lack of communication and 2. The fact that all five of them were waiting. Which is all just sucky things to deal with, but nothing that would require any sort of triage.

It’s the system of only seeing Medicaid patients on one day…and that is a problem with the influx of Medicaid patients on doctors offices.

I’m not going to lie, my first thought upon reading this post was “How dare he? He has free care for his children and he is going to bitch about how that care is doled out to him? How dare he complain about the hand that feeds him?!”

But, I held off… waited for my morning caffeine to wear off and now I can hopefully offer respectful and productive discourse. 😉

I have a feeling that the ACA is responsible for the office wanting to drop Medicaid. The billing for both is a nightmare. I know several of my doctors will not accept patients who have the ACA version of the same insurance I have because they don’t get paid as much or as efficiently, and Medicaid has a similar reputation. It is probably a situation of “we could handle one clusterfk of an insurance company, but not several so we’re cutting it off.” The fact that your doctor found a way to continue seeing Medicaid patients speaks volumes. He was unwilling to throw all of you away and he should be commended for that. The issue with the doctor now needing to see patients that were previously seen by a NP is also an insurance thing. My insurance wants me seen by a doctor, not an NP, and they won’t pay otherwise. I agree that the office should at the very least let patients know how long it might take to be seen, but I also understand that they can’t keep the staff there indefinitely. As Dot said, a note on the door would probably be a workable solution in the short term.

As for not all patients being serious enough to be seen by the doctor, be part of the
solution rather than part of the problem. Gavin should definitely stay with this man who has seen him through it all, but that doesn’t mean you can’t take the other boys to a different doctor
since they are mostly going for med checks. That would be a small step in alleviating the overbooking problem, and it would help both you and the other patients. It would also cure the problem of having to take all the kids with you and having the E’s sitting in a waiting room for
hours at a time. I really do feel sorry for the staff at these overworked offices. They are likely
dealing with angry patients on a daily basis. I know that no matter how much I like my job, that is going to change quickly if I have people yelling at me or angry with me every time I pick up
the phone.

It’s nice to see you Kim. The E’s see the nurse practitioner as I stated previously but they have to see the doctor on occasion as per their treatment plan.

I have a really good relationship with everyone at the office and so we can have these conversations without there being any lasting damage or ill feelings. As for the free healthcare, I had really good private coverage but it wouldn’t touch anything the boys have. That’s why many families like mine have to move to Medicaid…..

This is interesting…and moving the conversation in another direction…are you saying you think Medicaid is better than private insurance (in your case)? Cause I have to be honest, I can’t imagine the hoops that you have to go through with working within that system.

Medicaid is absolutely better, without question. So many private insurance companies will not cover anything Autism related at all.

It’s not without its drawbacks but I suspect most parents would agree. Gavin has Medicaid because he’s on disability.

Google things like Autism and insurance. It’s a nightmare. I think in some ways it’s getting better because states are forcing companies to cover Autism but it’s not everywhere and last I checked, it wasn’t in Ohio.

It makes sense, and I can only go by my insurance…and I have everything covered, it’s just at the cost of a copay. At this point, I would think most treatments are in fact covered. Especially with the move to ‘obamacare’ type coverage the past 8 years

I didn’t mean to make it sound like you had given the office staff a hard time, I was just making comment that I think it can often be a thankless job when you’re in an office as busy as this doctor’s seems to be. To help solve part of the problem, would it be possible for you (and are you willing) to move the E’s to a different doctor? That would also keep you from having to pull them out of school for early morning appointments; something that’s not an issue for Gavin.

I’m confused about the insurance. I admittedly know little about autism coverage because it’s not something I have to worry about, but is Medicaid seriously better coverage than private insurance? Or it is a money thing? I can understand it being a much better choice cost-wise… from January of 2014 through today, I have put out just over $44,000 in copays, deductibles, and coinsurance, but my coverage is excellent and I can go to any doctor I want, specialists included. Knock on wood, there is nothing that I have had to fight for or do without because insurance denied me. Granted, I am aware that affording private insurance would be close to impossible for you, but I am curious whether it is the cost or coverage that is more attractive to the average person.

I’m not going to lie, my first thought upon reading this post was “How dare he? He has free care for his children and he is going to bitch about how that care is doled out to him? How dare he complain about the hand that feeds him?!”

But, I held off… waited for my morning caffeine to wear off and now I can hopefully offer respectful and productive discourse. 😉

I have a feeling that the ACA is responsible for the office wanting to drop Medicaid. The billing for both is a nightmare. I know several of my doctors will not accept patients who have the ACA version of the same insurance I have because they don’t get paid as much or as efficiently, and Medicaid has a similar reputation. It is probably a situation of “we could handle one clusterfk of an insurance company, but not several so we’re cutting it off.” The fact that your doctor found a way to continue seeing Medicaid patients speaks volumes. He was unwilling to throw all of you away and he should be commended for that. The issue with the doctor now needing to see patients that were previously seen by a NP is also an insurance thing. My insurance wants me seen by a doctor, not an NP, and they won’t pay otherwise. I agree that the office should at the very least let patients know how long it might take to be seen, but I also understand that they can’t keep the staff there indefinitely. As Dot said, a note on the door would probably be a workable solution in the short term.

As for not all patients being serious enough to be seen by the doctor, be part of the
solution rather than part of the problem. Gavin should definitely stay with this man who has seen him through it all, but that doesn’t mean you can’t take the other boys to a different doctor
since they are mostly going for med checks. That would be a small step in alleviating the overbooking problem, and it would help both you and the other patients. It would also cure the problem of having to take all the kids with you and having the E’s sitting in a waiting room for
hours at a time. I really do feel sorry for the staff at these overworked offices. They are likely
dealing with angry patients on a daily basis. I know that no matter how much I like my job, that is going to change quickly if I have people yelling at me or angry with me every time I pick up
the phone.

It’s nice to see you Kim. The E’s see the nurse practitioner as I stated previously but they have to see the doctor on occasion as per their treatment plan.

I have a really good relationship with everyone at the office and so we can have these conversations without there being any lasting damage or ill feelings. As for the free healthcare, I had really good private coverage but it wouldn’t touch anything the boys have. That’s why many families like mine have to move to Medicaid…..

This is interesting…and moving the conversation in another direction…are you saying you think Medicaid is better than private insurance (in your case)? Cause I have to be honest, I can’t imagine the hoops that you have to go through with working within that system.

Medicaid is absolutely better, without question. So many private insurance companies will not cover anything Autism related at all.

It’s not without its drawbacks but I suspect most parents would agree. Gavin has Medicaid because he’s on disability.

Google things like Autism and insurance. It’s a nightmare. I think in some ways it’s getting better because states are forcing companies to cover Autism but it’s not everywhere and last I checked, it wasn’t in Ohio.

It makes sense, and I can only go by my insurance…and I have everything covered, it’s just at the cost of a copay. At this point, I would think most treatments are in fact covered. Especially with the move to ‘obamacare’ type coverage the past 8 years

I didn’t mean to make it sound like you had given the office staff a hard time, I was just making comment that I think it can often be a thankless job when you’re in an office as busy as this doctor’s seems to be. To help solve part of the problem, would it be possible for you (and are you willing) to move the E’s to a different doctor? That would also keep you from having to pull them out of school for early morning appointments; something that’s not an issue for Gavin.

I’m confused about the insurance. I admittedly know little about autism coverage because it’s not something I have to worry about, but is Medicaid seriously better coverage than private insurance? Or it is a money thing? I can understand it being a much better choice cost-wise… from January of 2014 through today, I have put out just over $44,000 in copays, deductibles, and coinsurance, but my coverage is excellent and I can go to any doctor I want, specialists included. Knock on wood, there is nothing that I have had to fight for or do without because insurance denied me. Granted, I am aware that affording private insurance would be close to impossible for you, but I am curious whether it is the cost or coverage that is more attractive to the average person.

I think your idea of the office telling you the real time you will be seen is a great one. Sadly, the psychiatrist probably had to let his office staff go home for the night, so there was no one to do that kind of work. Kudos to that doc for staying, though. If he/she was 2 hours behind, it’s a cinch those were not extra paid hours, just more time spent on people who needed more help. It’s got to come out of someone’s hide when there is too much need and not enough hands on deck. Thank God that physicians still see their profession as a helping one.

Hey, maybe you could write an app that would text the appointments on Monday to let them know how far behind things were. Even if there was no office staff, the physician could update the app every hour or so…Probably some HIPAA violation there. Okay, maybe they could tape a piece of paper to the front door.

I think your idea of the office telling you the real time you will be seen is a great one. Sadly, the psychiatrist probably had to let his office staff go home for the night, so there was no one to do that kind of work. Kudos to that doc for staying, though. If he/she was 2 hours behind, it’s a cinch those were not extra paid hours, just more time spent on people who needed more help. It’s got to come out of someone’s hide when there is too much need and not enough hands on deck. Thank God that physicians still see their profession as a helping one.

Hey, maybe you could write an app that would text the appointments on Monday to let them know how far behind things were. Even if there was no office staff, the physician could update the app every hour or so…Probably some HIPAA violation there. Okay, maybe they could tape a piece of paper to the front door.

“Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well.”

“Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well.”

Yeah. I get that’s frustrating, but you are really taking a shitty position on this one. Your son isn’t more important than the other patients and the length of time you have been at the doctor will not matter. At all. Not even a tiny bit.

I suggest you ask the office (and Doctor) how to best deal with the way things are and go from there…because respectful or not if you even hint at either of the two things above and you will most likely be dismissed.

Take a step back and reread what I wrote. I was venting. Secondly, I never said he was more important (although what parent wouldn’t prioritize their own child), I said he was more complicated and in need of very specialized services that not every kid there needs.

Many of the kids that do go through, don’t need the same level of specialized care, that’s just a fact. That’s not my opinion, that’s the protocol at the doctors office or it was before this insurance debacle.

The problem is that every person on Medicaid can only be seen on one day and so there’s no longer a triage because of the limited access now.

The issue is that this impacts the patients who need the specialized care but can’t get it anymore because they now have to cram everyone into 4 days a month. There’s very little ability to prioritize anyone now.

There’s nothing wrong with my stance on this. I’m not taking away from any of the other kids but the reality is that a kid like Gavin has no other options and can’t be treated by anyone else.

That’s what I was saying. Does that make sense?

Also when I start out a post by saying that I’m venting/ranting, that means I’m sharing my feelings in the moment and so it’s more of a reaction, rather than having time to think about everything and come up with the perfect things to say.

I get venting….but that doesn’t mean you can’t be questioned on any of it. And whether or not you directly said ‘important’ you definitely implied that Gavin should get front of the line treatment. No reason to argue that point, it’s how I read it.
With that said…..
I’m sure all of the hassles are due to Medicaid red tape and the sheer number of people that can only go to a finite number of doctors that will accept it. Which is why the ‘help me navigate the system’ conversation would be much more productive.

I had that conversation with the nurse yesterday and her reply was that she wishes she could tell me it was going to get better but it’s only going to get worse.

As for your first paragraph, I wasn’t saying in any way shape or form that Gavin was more important. I was saying that he needed highly specialized care, that not every kid there needs. That’s just a fact. It’s about people getting what they need, when they need it.

Because of all the changes to healthcare, this doesn’t seem possible anymore.

By the way, I do appreciate your approach with your comments. We can see things differently but the underlying respect is there. Thank you very much for that… ☺

Yeah. I get that’s frustrating, but you are really taking a shitty position on this one. Your son isn’t more important than the other patients and the length of time you have been at the doctor will not matter. At all. Not even a tiny bit.

I suggest you ask the office (and Doctor) how to best deal with the way things are and go from there…because respectful or not if you even hint at either of the two things above and you will most likely be dismissed.

Take a step back and reread what I wrote. I was venting. Secondly, I never said he was more important (although what parent wouldn’t prioritize their own child), I said he was more complicated and in need of very specialized services that not every kid there needs.

Many of the kids that do go through, don’t need the same level of specialized care, that’s just a fact. That’s not my opinion, that’s the protocol at the doctors office or it was before this insurance debacle.

The problem is that every person on Medicaid can only be seen on one day and so there’s no longer a triage because of the limited access now.

The issue is that this impacts the patients who need the specialized care but can’t get it anymore because they now have to cram everyone into 4 days a month. There’s very little ability to prioritize anyone now.

There’s nothing wrong with my stance on this. I’m not taking away from any of the other kids but the reality is that a kid like Gavin has no other options and can’t be treated by anyone else.

That’s what I was saying. Does that make sense?

Also when I start out a post by saying that I’m venting/ranting, that means I’m sharing my feelings in the moment and so it’s more of a reaction, rather than having time to think about everything and come up with the perfect things to say.

I get venting….but that doesn’t mean you can’t be questioned on any of it. And whether or not you directly said ‘important’ you definitely implied that Gavin should get front of the line treatment. No reason to argue that point, it’s how I read it.
With that said…..
I’m sure all of the hassles are due to Medicaid red tape and the sheer number of people that can only go to a finite number of doctors that will accept it. Which is why the ‘help me navigate the system’ conversation would be much more productive.

I had that conversation with the nurse yesterday and her reply was that she wishes she could tell me it was going to get better but it’s only going to get worse.

As for your first paragraph, I wasn’t saying in any way shape or form that Gavin was more important. I was saying that he needed highly specialized care, that not every kid there needs. That’s just a fact. It’s about people getting what they need, when they need it.

Because of all the changes to healthcare, this doesn’t seem possible anymore.

By the way, I do appreciate your approach with your comments. We can see things differently but the underlying respect is there. Thank you very much for that… ☺

Quoting you
“There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.”
How dare you say that? You preach and preach about people from the outside judging your kids. You talk about how one of the worst things to say to an autism parent is ‘Well he doesn’t look autistic’ then you turn around and play doctor? Laughable! Rob, you were an EMT for a very very short time, that does not give you the insight to triage psychiatric patients.
You need to step back and check your ego, it’s getting a tad out of hand.

So ban me.
And many many years is also flawed according to your own timeline.
But EMT or Medic still doesn’t give you the right to judge and triage other patients. You don’t go into the appointment with them, you have no idea what happens behind that doctors closed door. You can only state it as a fact for your own kids.

This is worse than when you said the teachers at your special needs school don’t understand special needs kids.

And the only difference between an EMT and a medic is the ability to start an IV and administer drugs, it doesn’t give you a psychiatric degree. Unless there is some magical medic program in Ohio

Of course there should be triage. Cancer patients should be seen before ear infections. Are we really disputing that? And why so hostile? Aren’t we all in this world together? When people in your real life unburden themselves to you, do you immediately attack them? Please think about a new approach, I think it would benefit you as well as people you come into contact with.

But should cancer patients always be seen before ear infections for all appointments? This was a routine appointment, not an emergency which would immediately remove any critical need. Seems like the issues were 1. lack of communication and 2. The fact that all five of them were waiting. Which is all just sucky things to deal with, but nothing that would require any sort of triage.

It’s the system of only seeing Medicaid patients on one day…and that is a problem with the influx of Medicaid patients on doctors offices.

Quoting you
“There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.”
How dare you say that? You preach and preach about people from the outside judging your kids. You talk about how one of the worst things to say to an autism parent is ‘Well he doesn’t look autistic’ then you turn around and play doctor? Laughable! Rob, you were an EMT for a very very short time, that does not give you the insight to triage psychiatric patients.
You need to step back and check your ego, it’s getting a tad out of hand.

So ban me.
And many many years is also flawed according to your own timeline.
But EMT or Medic still doesn’t give you the right to judge and triage other patients. You don’t go into the appointment with them, you have no idea what happens behind that doctors closed door. You can only state it as a fact for your own kids.

This is worse than when you said the teachers at your special needs school don’t understand special needs kids.

And the only difference between an EMT and a medic is the ability to start an IV and administer drugs, it doesn’t give you a psychiatric degree. Unless there is some magical medic program in Ohio

Of course there should be triage. Cancer patients should be seen before ear infections. Are we really disputing that? And why so hostile? Aren’t we all in this world together? When people in your real life unburden themselves to you, do you immediately attack them? Please think about a new approach, I think it would benefit you as well as people you come into contact with.

But should cancer patients always be seen before ear infections for all appointments? This was a routine appointment, not an emergency which would immediately remove any critical need. Seems like the issues were 1. lack of communication and 2. The fact that all five of them were waiting. Which is all just sucky things to deal with, but nothing that would require any sort of triage.

It’s the system of only seeing Medicaid patients on one day…and that is a problem with the influx of Medicaid patients on doctors offices.

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